Looking Forward - Mead Johnson Nutrition · PDF fileA Guide for Parents of Children with Cleft...

Cleft palate A cleft palate may consist of little more than a notch in the soft palate at the very back of the mouth. It may extend from the back of the mouth to where the soft and hard palates join. Or it may run the entire length of the roof of the mouth. Clefts of the palate are often associated with clefts of the lip.

Cleft of soft and hard palates Complete cleft of lip and palate

Cleft of back of soft palate Complete cleft of soft palate

�A Guide for Parents of Children with Cleft Lip and Cleft Palate

Looking Forward

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Preface Mead Johnson hospital representatives have received a steady stream of requests for Looking Forward: A Guide for Parents of Children with Cleft Lip and Cleft Palate since it was first published in �99�. After this free publication went out of print several years ago, craniofacial centers began to photocopy their last copies to give to the parents of children born with cleft lip or palate.

The continued demand for Looking Forward prompted us to publish a second edition, bringing the medical content up to date and adding new resources for parents. This edition includes information about ultrasonography, for example, which has made prenatal diagnosis possible. The sections on financial aid, family support groups, Internet resources, and books and videos have been updated. Craniofacial experts and consultants have reviewed every aspect of the booklet to make the information current.

We are pleased that Mead Johnson can again offer Looking Forward as a free resource to the families served by craniofacial and cleft palate centers throughout the country.

Jon A. Vanderhoof, MD Mead Johnson NutritionalsAcknowledgements

Mead Johnson wishes to thank the craniofacial specialists and other consultants who contributed to this revision, as well as Barbara Cox, the writer who collaborated with cleft palate experts to create the first edition of Looking Forward published in �99� and prepared this revised edition.

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Foreword

New parents naturally look forward to the birth of a baby with excitement and joy. But when their baby is born with a cleft lip and/or cleft palate, the parents are usually shocked. Their first feelings are often confusion, fear, and even shame. They may have a hard time believing doctors who say that their baby will be all right.

However, there is good cause for optimism. Impressive strides have been made in the treatment of cleft lip and cleft palate. Working together, the health professionals on a cleft palate team can examine your baby and recommend a complete course of treatment that begins in the first months of life. With their expertise, your baby’s cleft lip and/or palate may be corrected early to help him or her develop normal or nearly normal speech and appearance.

If your child has a cleft lip, some traces of a scar will remain after lip surgery. If the cleft involves the palate, speech problems may develop. The child may have dental problems requiring braces or oral surgery. Whether a child’s problems can be completely overcome depends on the success of surgery to close the palate, proper orthodontic treatment, appropriate speech therapy, and the care and training you provide at home.

Whether your child develops a happy, whole spirit depends a lot on your acceptance and love. Babies need parents who are cheerful, affectionate, and interested in them. They need people around them who are positive and optimistic about their future, emphasizing their positive traits and gifts. But most of all, they need to be treated like normal children, with the same potential, needs, and problems as other children their age.

John A. Nackashi, MD, PhD Medical Director Craniofacial Center, University of Florida

Prenatal diagnosis ......................1 Why did this happen? .................2 Are parents to blame? Guilt feelingsSpecial concerns ......................... 4 Hospitalizations Reactions of other children Giving your child information Your child’s intelligenceGetting professional care .......... 6 Cleft palate teams Team members Anatomy of clefts ...................... 8 Cleft lip Cleft palate Feeding your baby ..................... 11 Breast or bottle? ....................... 12 Choosing a feeding method Infant formula Breastfeeding ........................... 14Bottle-feeding ........................... 16Planning surgery ....................... 19Cleft lip surgery ......................... 20 In the hospital At home How the repaired cleft looksCleft palate surgery ...................22 In the hospital At home Possible additional surgery

Artificial palates ......................... 25 For babies For older childrenYour child’s teeth ....................... 27Your child’s hearing ...................28 Hearing tests and ear exams Language and hearingYour child’s speech development ..............................30 Making speech sounds The speech pathologist What you can do ........................ 32Parent support groups .............. 33Financial assistance ...................34 Federal and state assistance Assistance from nonprofit organizationsOnline resources .......................36Books and videos ...................... 37For breastfeeding mothers .......39 Breast pumps Information and supportLooking Forward ...................... 40 Four families share their inspirational stories

Contents


Prenatal diagnosis Ultrasound examinations are now routine procedures during pregnancy, and the technology continues to improve. As a result, prenatal diagnosis of cleft lip is now possible. Cleft palate typically can’t be seen on ultrasound because the images show only outer, visible body structures. Many babies with cleft lip are now diagnosed during a routine sonogram around the �8th week of the mother’s pregnancy.

When a physician sees a possible facial abnormality on a level I sonogram, the mother is referred to a hospital or clinic for a �D level II sonogram. This is nearly �00 percent reliable in detecting a cleft lip.

While expectant parents are generally upset to learn about the presence of a cleft before their baby’s birth, they are much better prepared to greet their newborn. Often, they are pleased to see that the cleft isn’t as severe as they’d feared. They may not be as overwhelmed by the challenges ahead, because they’ve had time to find a cleft palate team, arrange contacts, and gather information about the condition and its treatment. Also, they may be able to join a parent support group in their community or contact a family living near them in which a child was born with a cleft lip or palate.

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Are the parents to blame?If you’re like most parents, you’ve probably asked yourself what you might have done to bring about this condition. You may try to place the blame somewhere. Unless cleft lip and palate are clearly inherited, no amount of detective work is likely to turn up a specific cause in your child.

However, it’s true that a couple with a child who has a cleft run a higher than average risk of having other children with clefts. Also, if more than one person in the family has a cleft, the future risks are higher, depending on how closely they’re related to the parents.

Genetic factors are complicated. Parents of a child with a cleft who are thinking about having more children can ask their doctor to refer them to a genetic counselor. These specialists study inherited conditions. By examining the child, reviewing medical records and learning the family’s background, a geneticist can counsel the family about their general risks. That risk assessment might change as the child grows older if other birth defects or poor growth are present or become apparent.

Guilt feelings You should avoid dwelling on why your baby was born with a cleft and whether you are responsible. When parents focus on reasons for the cleft and who’s to blame, they’re likely to put off dealing with the challenges ahead. It hurts to bring a baby with a cleft into the family when everyone expected a perfect child, but letting go of guilt and blame helps everyone accept the situation, and that, in turn, helps the baby respond to treatment more successfully.

Why did this happen?Why was your baby born with a cleft lip or palate? The condition occurred because parts of the face and mouth failed to fuse as expected during a critical stage of early fetal life—before the �2th week of the pregnancy. We all had clefts of the lip and palate during the third month of life in the womb, but in most of us, the gaps closed. In your baby, the process was never completed for some reason. It’s important to understand that no vital parts are missing. The parts just didn’t fuse correctly. The purpose of surgery is to bring the parts of the palate together the way nature intended.

Babies born with clefts experience no discomfort because of the condition, although feeding may be difficult.

In a few families, genes are known to play a role, because the condition is seen in more than one generation. However, this is unusual. Most children with clefts have no close relatives with the same problem, although distant relatives are sometimes identified who have had clefts.

Researchers believe that there is no single explanation for the occurrence of cleft lip or palate. Several factors, acting together, are responsible in most cases. Clefts have been reported in only one baby of a pair of identical twins, despite their having identical genes.

Infants sometimes have serious genetic disturbances that affect early development in the womb in a number of ways. When these babies have clefts of the lip and palate, other physical problems may be present, too. Evaluation of babies in the first few months of life usually uncovers such abnormalities.

Ethnic background seems to influence the tendency for clefts to occur. Asian, Native American, and Hispanic babies are more likely to be born with clefts, while African-American babies are less likely. About three boys are born with clefts of the lip for every two girls. However, clefts of the palate but not the lip are more common in girls. Overall, about one in 600 to 750 babies is born with a cleft.

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Special concernsMany parents of children with cleft lip and/or palate worry about the emotional impact of the condition on their child. Actually, studies indicate that these children as a group are as well-adjusted as other kids. The key to how well kids adapt to their condition appears to be the way parents work out their feelings of disappointment and whether they relate to the child in positive, loving ways.

When the baby born with a cleft comes home from the hospital, the reactions of close family members and friends may be difficult to deal with. People may express their sympathy in clumsy ways or ask too many questions. The best approach is to handle them in a straightforward, positive manner, indicating that your child is expected to be quite normal after treatment.

HospitalizationsCertainly children with clefts have hurdles to overcome. They face uncomfortable treatments. It’s no fun to make frequent visits to a clinic. Hospitalizations may be especially difficult. As the child’s parent, you may find it hard to be firm about what needs to be done while at the same time showing sympathy for your child’s fears. Most cleft palate clinics offer professional counseling to families who request it.

Reactions of other childrenYou may worry that, as your child grows older, kids will ask questions, make unkind remarks, or tease. A child with a cleft can’t be shielded from this. Most playmates are curious, not mean, and the child will sense this. Children who are helped to understand their condition in a manner appropriate to their age are usually more able to cope with questions.

If teasing is a problem at school, talk with the teacher and possibly the guidance counselor. At most schools, bullying is not acceptable. Providing a child’s class with information about the occurrence and treatment of clefts in babies may be all that’s needed to change attitudes and end the teasing. Try to be as matter-of-fact as possible and avoid overreacting if your child reports problems at school. Stay in touch with the teachers, making them aware of planned absences from school, the child’s medical progress, and concerns you may have about academic or social issues. You should make the cleft palate team aware of any troubles your child is having at school.

Giving your child informationChildren with clefts should be given the facts as they ask for them in words they can understand. When your child is given information in a truthful but reassuring way, he or she will be able to handle things better. The child should be encouraged to ask questions of the doctors and other health professionals on the cleft palate team. Most are good at talking with kids, and it makes your child feel like more of an active participant in treatment.

Your child’s intelligenceSometimes parents wonder whether their child’s cleft lip and palate might be accompanied by problems with mental development. Unless accompanied by a cluster of other problems (a syndrome), there is no connection. Children with clefts may be bright, average, or slow, just like other kids. They grow up to become scientists, doctors, artists, actors, office workers, and mechanics. If you are worried about your child’s mental development at any time, ask the cleft palate team for an evaluation by a psychologist. Screening for learning disorders is, nonetheless, an important part of the management plan.

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Getting professional careWith proper treatment, a child’s cleft lip or palate can be repaired. Corrective surgery allows the child to look normal, eat without difficulty, and speak clearly. However, the overall treatment is complex, and many specialists must work together to develop and carry out a plan that will meet each child’s individual needs.

Cleft palate teamsA team approach to the correction of cleft lip and palate is essential. It involves close cooperation among members of a group of specialists who meet regularly to plan all aspects of management for each individual child. They treat many more children with cleft lip and palate than most other professionals, and have a major commitment to this specialty area of medicine.

Most states have at least one craniofacial team located at a large medical center. Heavily populated states such as New York and California have many teams. You can get a referral to the nearest craniofacial or cleft palate team from the hospital where your baby was born. Or you can contact the Cleft Palate Foundation, which has state-by-state and international listings on their Web site at http://www.cleftline.org. Their toll-free phone number is 1-800-24-CLEFT. The listings may be referred to as cleft palate centers, craniofacial centers, or orofacial centers.

Your cleft palate team will try to stay in regular contact with your pediatrician responsible for your child’s care from birth onward. Your pediatrician will be invited to provide the team with information about your baby’s weight gain, feeding, and any ear problems, which tend to be more common in infants with clefts. Encourage your pediatrician to contact the team at any time. Interaction is also important between the team and your child’s local dentist, speech pathologist, and ear-nose-and-throat (ENT) doctor, if you have one.

The best time to first visit with the cleft palate team is within the first weeks of life, and earlier when possible. You may have to travel to a craniofacial center several times in the first year. After that, visits will probably be less frequent. The cleft palate team will be glad to contact your child’s local physicians and specialists to update them on treatment planning. It’s especially important that your pediatrician understand the various steps of treatment, so he or she can be

Evaluates hearing

Coordinates all aspects of care

Advises parents about feeding methods and diet

Counsels parents and older children about child-bearing risks

Corrects the position of teeth

Performs dental and jaw surgery

Treats ear, nose, and throat problems

Tracks the development of children, treats their illnesses

Provides dental care to children

Performs surgery to improve the child’s appearance and function

Makes artificial teeth and mouth prostheses

Evaluates children’s mental development, counsels parents

Helps families with psychological adjustment and finances

Helps children overcome speech problems and speak normally

Performs special x-ray studies

Not all of these specialties are represented on all cleft palate teams.

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Team Members

6

Audiologist

Coordinator

Dietitian

Geneticist

Orthodontist

Oral/maxillofacial surgeon

Otolaryngologist (ENT doctor)

Pediatrician

Pediatric dentist

Plastic surgeon

Prosthodontist

Psychologist

Social worker

Speech pathologist

Radiologist

on the lookout for problems that may need the team’s attention. A primary doctor for the baby should be identified and should become an extended member of the team. Family follow-through on referrals and follow-up is important.


Anatomy of cleftsThe roof of the mouth, called the hard palate, is hard and bony. It arches over the front of the tongue and holds the teeth. The soft palate consists of muscle that runs from the hard palate to the back of the mouth. The muscles in this soft tissue are essential to normal speech.

Clefts of the lip and palate (roof of the mouth) vary in severity from one baby to the next. While most babies have both cleft lip and palate, some have only one. Clefts may occur on one or both sides. The basic types of clefts are described below.

Cleft lipThe lip may be cleft on one side (unilateral) or both sides (bilateral). When a one-sided cleft goes all the way through the lip, the baby’s nose tends to look spread out. Plastic surgery on the lip helps make the nose look more normal.

When the lip is cleft on both sides, the cleft may go through the gums, making the center part of the lip and gums swing upward and look pushed out. Sometimes treatment is started simply by using tape to bring the tissue into a more normal position. Children with bilateral clefts may need more than one operation to make the lip as normal as possible. The first operation is usually done in the early months of life.

A two-sided cleft is harder to treat because less tissue is available for the plastic surgeon to work with when closing the cleft. Also, when the baby’s teeth come in, some may be missing or poorly formed in the area of the cleft.

Soft palate open. When the soft palate is open, the muscles relax for breathing and making certain speech sounds.

Soft palate closed. When the soft palate is closed, the muscles contract to help seal off the nasal cavity so that foods or liquids can be swallowed. The muscles also seal off the nose when certain speech sounds are made.

The hard and soft palates separate the nasal cavity from the inside of the mouth.

Normal roof of mouth

One-sided cleft lip

Two-sided cleft lip8 9


Cleft palate A mild case of cleft palate may consist of little more than a notch in the soft palate at the back of the mouth. In moderate cases, the clefts are somewhat longer, extending from the back of the mouth to the place where the soft and hard palates join. In severe cases, the cleft may run the entire length of the roof of the mouth. Clefts of the lip often occur along with cleft palate.

Feeding your baby

Newborns with clefts need the same good nutrition as other babies. They also need the same cuddling, closeness, and time to suckle for comfort and pleasure. The feeding position for babies with clefts is a sitting or upright position. Your baby’s head should be tilted back just a little so the milk flows down the throat rather than into the nose. In babies with cleft palate, it’s hard to keep liquid out of the nose, but the problem can be lessened by lining the head up with the body so the head doesn’t tilt forward or backward and isn’t turned to either side.

You may find feeding your baby hard at first. Babies with a cleft lip tend to have trouble closing their mouths around the nipple enough to make a tight seal. Those with cleft palate usually can’t create enough suction to draw milk from the breast or bottle.

In babies with cleft palate, one or more of the following may be a problem.

• Feeding may take too long.

• The baby may get tired and fussy from all the effort.

• The baby may swallow too much air, causing stomach discomfort or spitting up.

• Food may come back out through the nose.

• The baby may cough or choke from getting feeding in the windpipe.

• Weight gain may be slow because the baby isn’t getting enough breast milk or formula. Cleft of soft and hard palates Complete cleft of lip and palate

Cleft of back of soft palate Complete cleft of soft palate

Your baby should be in a sitting position while feeding, with his or her head tilted back just a little.

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Most feeding problems can be overcome. If your baby tires easily, offer smaller, more frequent feedings. For bottle feedings, attach a special nipple that allows the milk to flow more easily. You can also use soft plastic bottles that can be squeezed gently during feeding.

Burping a baby helps bring up swallowed air. If coughing or choking occurs, raise the baby to your shoulder to be burped. Choking often results from milk flow that’s too fast or not in rhythm with the baby’s swallowing.

Parents and babies usually need a little time to find a feeding style that works well. Feeding will go more smoothly with practice and patience.

Your pediatrician will give you feeding guidelines, including how and when to start solid foods. Of course, your cleft palate team will advise you about changes needed in your baby’s diet after surgery to protect the repaired tissues in the mouth. After healing, your baby can resume his or her normal diet and regular way of eating.

Breast or bottle?Doctors agree that breast milk is best for babies. It has a perfect balance of nutrients in an easily digestible form. It also contains immune substances that protect babies from infection.

Breastfeeding allows the mother to comfort a baby with physical contact. Physical closeness strengthens the bond between mother and baby, and often helps the mother with her feelings about the baby’s cleft.

Some experts believe that breastfeeding helps the face and mouth form normally because the muscles get stronger with nursing. Breastfeeding requires far more exercise of the muscles than bottle-feeding.

Choosing a feeding methodThe choice between nursing and bottle-feeding will depend partly on your baby’s condition and partly on your preferences and how much time you have. Babies with a cleft lip can usually breastfeed after the mother learns the right nursing technique. Babies with clefts of the palate tend to be harder to feed. Those with clefts extending from the soft palate into the hard palate usually can’t breastfeed at all, because they have no way of creating enough suction to draw out the milk.

If you have your heart set on breastfeeding, you can give your baby breast milk even if his or her condition makes nursing too difficult. Breast milk can be expressed with a pump, then stored in the refrigerator or freezer, and given at regular feeding times. Some mothers are able to express milk by hand, but it isn’t easy.

No mother should feel guilty for not breastfeeding a baby with a cleft. Mothers who try it and fail after a week or two find that they exhaust both themselves and the baby. They never know how much has been taken at a feeding, and their babies tend to be underweight and irritable. There are too many other stresses involved in the care of these infants to make breastfeeding a battle.

Sources of information on breastfeeding and breast pumps appear at the back of this booklet.

Infant formulaThe best alternative to breast milk is an infant formula such as Enfamil LIPIL®. Babies who aren’t nursing should receive infant formula for the first year of life. Enfamil LIPIL is formulated to resemble the nutritional content of breast milk as much as possible. Enfamil® Gentlease® LIPIL® is a milk-based formula with partially broken down proteins and reduced levels of lactose,* designed for babies with fussiness or gas.

*~1/5 the lactoste of a full lactose, routine, milk-based formula.

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BreastfeedingIn babies with a cleft lip only, breastfeeding requires a period of trial and error. Of course, this is true of babies with normally formed lips, too. If your baby has a cleft lip that makes it hard to form a seal around the nipple, you can mold your breast to the shape of your baby’s mouth with your fingers and thumb. Your thumb can be used to cover the cleft. For your baby to nurse, your nipple must be positioned on one side of the cleft or the other. A nurse trained to teach breastfeeding skills can help you and your baby learn.

Nursing is generally harder for babies with cleft palate, because they can’t create enough suction to draw the mother’s nipple into the mouth. However, if your baby has a cleft in the soft palate no bigger than a notch at the back, breastfeeding may be possible. Hold your breast so the nipple sticks out and then push the nipple as far into your baby’s mouth as possible.

Start nursing when the breast is full and during milk let-down. The milk that comes later is harder to draw out. It helps if you begin pumping out some milk just before feeding so it flows freely when your baby starts nursing.

In general, babies with cleft palate do better when fed breast milk from a bottle. The milk can be expressed with a special breast pump and fed right away or stored for a later feeding. Hold your baby at your breast before and after the bottle-feeding to share feelings of closeness and intimacy.

Mother’s fingers and thumb mold the breast.

Mother’s thumb fills the cleft space.

No cow’s milk, please The American Academy of Pediatrics advises parents not to feed their babies cow’s milk until they’re at least one year old. Here are the reasons.

• Cow’s milk has too much protein of a type that’s hard for babies to digest.

• Cow’s milk contains animal fat, which is poorly digested by young babies.

• The iron levels in cow’s milk are low, which can lead to anemia.

• Some mineral levels are too high in cow’s milk while others are too low.

Breastfeeding tips• Place a warm, wet washcloth over your breasts before nursing to promote milk

flow. Start releasing the milk by massaging your breasts.

• Hold your baby in a partly upright position.

• Hold your nipple in your baby’s mouth during the entire feeding.

• If your baby gets too tired to finish a feeding, express the breast milk that’s left by hand or with a pump. Feed it in a bottle or plastic syringe, or refrigerate it for a later feeding.

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Bottle-feedingWhile many special nipples are available for feeding infants with cleft lip and/or palate, most babies do fine with regular nipples that are soft and allow the milk to flow easily. Some nipples may be softened by boiling. Some mothers find premie nipples helpful. They’re made for premature babies and can be obtained from a hospital nursery. Many hospitals use Mead Johnson’s Disposable Cleft Lip/Palate Nurser. Your cleft palate team can help you find these in your local area, or call Mead Johnson at 1-800-BABY123.

Cross-cut nipples work best. When your baby squeezes the cross-cut open, the milk flows freely but not too fast because the baby controls the flow. The milk should drip out one drop at a time, rapidly, but not in a steady stream when the bottle is held upside down.

Nipples with one large hole in the middle don’t work as well because the milk tends to rush out too fast, and the baby can’t control the flow.

Regular nipples may not be long enough for some babies with clefts. In such cases, one or more of the nipples shown in this booklet should be tried. Finding the best nipple is often a matter of trial and error. Over time, you may need to change the type of nipples you use. This shouldn’t be done too quickly or too often, though, as it can confuse your baby.

Soft plastic bottles that can be squeezed or bottles with disposable liners may help. When gentle pressure is put on a plastic bottle, the milk flow increases as the baby sucks. Bottles with liners have the advantage of shrinking as the milk is drawn out so air doesn’t rush in when sucking stops. This makes your baby more comfortable during feeding because less air is swallowed.

Cross-cut nipple

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Mead Johnson Cleft Lip/Palate Nurser unit: This six-ounce soft plastic bottle can be squeezed to push milk through the cross-cut nipple. The units can be obtained from a pharmacy or by calling Mead Johnson at 1-800-BABY123.

Playtex® Nurser: The plastic bottle holds a disposable liner that collapses as milk is sucked out.

NUK® Newborn Orthodontic Nipple: The wide base on this nipple helps babies make a good seal with their lips.

Haberman Feeder®: This two-valve feeding system works well for babies whose suck is weak. The top compartment, separated by valves, keeps air out of the feeding. The unit may be difficult to obtain, however, and is expensive.

Planning surgery

Most parents want to arrange corrective surgery as soon as possible to give their baby normal function and appearance. When a baby has a cleft lip but the palate is normal, surgery is usually performed in the early months of life. Clefts of the palate are repaired a little later, but generally before the child is �8 months old.

If two or more operations are needed, they may be widely spaced. Complete healing from each surgery is important before the next one is performed. Also, the results of some operations are better when the face has grown and developed to some extent—especially the jaws and nose. Surgery may need to be coordinated with appearance of the child’s teeth, progress in speech skills, and other aspects of his or her development.

Many children have their last plastic surgery in their teen years, when the face has reached full growth. This is especially true of surgery on the nose. It’s easier for the plastic surgeon to achieve a good permanent result when the structure of the face has reached adult proportions.

At visits to the cleft palate center, you’re likely to hear other parents compare notes about their children’s treatment. Sharing with others is not only a source of comfort, it can also provide helpful information. However, you should remember that every child’s

Mead Johnson Cleft Lip/Palate Nurser unit

Playtex® Nurser

NUK® Newborn Orthodontic Nipple

Haberman Feeder®

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Playtex®, NUK®, and Haberman® are registered trademarks of entities unrelated to Mead Johnson Nutritionals.


plan of therapy is unique. The specialists on your child’s treatment team take many factors into consideration when planning surgery. Also, surgeons may differ in their preferences for specific surgical techniques and sequence of procedures.

Cleft lip surgerySurgery to repair a cleft lip is done in infancy, usually within the first three months of life. When your baby has gotten a healthy start, the surgeon can operate. If the surgeon suggests postponing lip surgery even though the baby is doing well, it may be to allow the tissue around the lip to grow more, so the result will be better.

Cleft lip surgery is not an emergency. Most babies with cleft lip can breastfeed or take a bottle with very little trouble if the palate isn’t cleft, too. However, parents are generally anxious to have the cleft lip repaired before showing their new baby to friends and relatives.

In babies with clefts on both sides of the lip (bilateral clefts), the shape of the nose may be affected to the extent that more than one operation is advisable. The surgeon’s goal is to give each child the best possible function along with the best possible appearance.

In the hospitalBefore surgery, the surgeon and a pediatric dentist evaluate the cleft to decide on the best treatment strategy. In young babies, the tissue around the mouth is flexible and can be molded with tape on the outside before surgery. Taping the lip brings the tissues closer together and in better alignment so that surgery will be easier to perform.

When your baby is ready for surgery, anesthesia will be started. A general anesthetic puts your baby to sleep so he or she is unaware of any part of the operation. During the operation, the surgeon brings the parts of the lip together with tiny stitches.

When you see your baby after surgery, his or her hands or arms may be restrained with fabric. This is done so he can’t touch or pull at the stitched area. The restraints don’t hurt, but most babies fuss at not being able to move their arms freely. Don’t be alarmed by the swelling you see in your baby’s face right after surgery. It won’t look that way for long.

For a few days, your baby will be fed slowly and carefully while held in a sitting position to keep discomfort at a minimum. A little water may be given at the end of each feeding to cleanse your baby’s mouth.

The hospital stay after surgery for cleft lip is usually very short.

At home When it’s time to take your baby home, you’ll be given medication to help her eat comfortably and sleep. The nurses will instruct you about how to feed and care for your baby. Most babies take their bottle or go back to breastfeeding within a week or so. In some hospitals, bottle-feeding or breastfeeding is resumed right away. Check with your doctor about this ahead of time.

A nurse will probably show you how to clean your baby’s stitches and remove crusts that may form. An ointment may be suggested to lessen crust formation.

Hand restraints may be recommended for your baby for a while after returning home. During this time, make sure your baby doesn’t rub her face on bedding or the side of the crib. Until the doctors say it’s okay, keep all hard and semi-hard objects away from your baby’s mouth, including straws, pacifiers, and hard nipples. If you’re breastfeeding, it’s fine to let your baby nurse, because your nipple conforms to the shape of your baby’s mouth. Also, it’s soothing and quieting.

Try to keep your baby from crying too much, as it pulls on the stitches. Parents should hold, cuddle, and play with their babies a lot during the healing period. If necessary, the doctor will prescribe a sedative to calm your baby.

Caring for a baby who’s had surgery for cleft lip or palate can be time-consuming and exhausting. Most parents need outside assistance. Remember that you can’t do it all yourself. Request help from family members and friends when your baby comes home from the hospital.

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If possible, hire someone part-time to do household chores, run errands, and baby-sit if you have other children. Make arrangements for a friend to come in so you can catch up on your sleep, and find a standby for times when you’re sick or have to be away from home.

How the repaired cleft looks

Your baby’s face will look much better when the cleft lip and underlying muscles are joined. The scar will stay pinkish-red for a few months and then slowly fade. It may take as long as a year or two for the scar to fade all that it’s going to. When the scar blends in with the skin around it, the plastic surgeon can judge whether another operation is needed. The planning of surgery depends to some extent on how the child is dealing with his or her condition.

It’s almost impossible to predict the long-term results of surgery in the months following the operation. Sometimes what looks like a permanent scar will disappear as the child grows. Other times, a small, pale scar will become more obvious over time. In general, more than one operation is needed to give the child the best possible appearance. Eventually the lip scar should be minimal.

Cleft palate surgery

Cleft palate surgery is performed on most babies when they’re between 6 and �8 months old. In a few instances, the palate can’t be closed surgically until the child is in preschool. Factors that influence the decision of when to close the palate are the size and health of the child, how severe the cleft is, and whether other craniofacial abnormalities are present.

Most surgeons try to schedule cleft palate surgery before the child begins to talk. This helps minimize abnormal speech habits that can develop when a child learns to speak with a cleft palate. Closure of the palate is essential for the child to develop normal speech.

Cleft palate surgery has two main goals:

• To give your child a palate long enough to seal the nose off from the throat and mouth so that normal speech can develop and normal eating is possible.

• To repair the soft palate so that its muscles can help open the Eustachian (yew-stay’-shun) tube—a narrow tube leading from the throat to the ear. When this tube is blocked, fluid can build up inside the ear and cause hearing loss.

In most cases, the surgeon will close the palate in one operation. However, sometimes more than one surgery is needed.

In the hospital

Before the operation starts, your child is put to sleep with general anesthesia. During the operation, the surgeon closes the palate either completely or as much as possible. The palate is joined in the center in layers of muscle and mucous membranes (the “skin” inside the mouth). When the tissues in the mouth have been moved to their new positions, the surgeon stitches them in place. Fabric restraints are then placed on your child’s hands or arms to prevent him from touching or pulling at the mouth area after waking up.

After the operation, from time to time, nurses may remove mucus and fluids from your child’s mouth with gentle suction. This is done to make breathing and swallowing easier. After the anesthetic wears off, the nurses offer your child sips of water, then clear liquids. Feeding begins soon afterward. Antibiotics may be given to prevent infection.

Children who have had palate surgery usually stay in the hospital from one to several days. The stitches may be left in place for a longer period of time. If your child’s surgeon uses dissolving stitches, there will be no stitches to remove.

At homeThe doctor may ask you to keep arm restraints on your child for a week or two after he or she returns home. It’s too tempting for small children to feel a sore area with their

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fingers, no matter what they’re told by parents. Remove the restraints one at a time several times a day so your child can exercise his arms. A good time to do this is during feeding.

Your child’s doctor will tell you how long to feed a liquid diet or one limited to soft, mushy foods. Don’t let your child use straws. Until healing is complete, keep potato chips, cookies, and any other crisp or hard foods out of reach.

Small toys that your child might put in his mouth should also be kept out of reach. If you need to take your child’s temperature because you suspect a fever, put the thermometer under his arm or use a rectal thermometer. In general, nothing hard or semi-hard should go in your child’s mouth until the doctor says that healing has progressed enough.

Possible additional surgery

In some children, the tissues of the repaired palate pull apart in places, causing a gap or hole called a fistula. Fistulas generally occur due to day-to-day pressure on the repaired tissues or because of an accidental puncture from a spoon or other hard object. Children with wide clefts tend to be prone to fistula formation. There’s no need to panic if this occurs. Often only one layer of repaired tissue pulls apart. In any case, it can be closed again.

Some children have clefts in the soft palate that can’t be closed properly by an operation performed early in life. They may need additional surgery. The cleft palate team usually recommends the procedure when the child continues to have problems talking normally in his preschool years, as determined by the speech pathologist at regular evaluations.

In such cases, the parents are asked to bring the child to the craniofacial center for a special evaluation. The evaluation includes making an x-ray movie of the inside of the child’s mouth and throat while the child repeats certain words and phrases. The speech

pathologist and plastic surgeon study the filmed movements of the soft palate carefully to determine whether surgery is needed and to plan the details of the operation if it will provide the child with a palate that functions normally.

As your child gets older, the doctors will evaluate the need for surgery on the gum ridge at the site of the original cleft. Children with clefts of the lip and gum often require a bone graft after they reach elementary school. The purpose of this procedure is to provide a solid base for new teeth to come through.

In some children, the upper jaw doesn’t grow as much as it would have if the cleft hadn’t been present. The surgeon and orthodontist will work together on a treatment plan to help the teeth come in straighter. When an underdeveloped upper jaw continues to pose problems after the child achieves his full growth in the teen years, a combination of surgery and orthodontia may be considered.

Artif icial palates

When a child’s cleft palate can’t be closed surgically or the craniofacial team feels that surgery should be postponed for a period of time, an artificial palate may be made. You may hear this referred to as a prosthesis, obturator, or appliance.

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For babies For the baby with a very wide cleft of the palate, a special appliance may be made to bring the structures in the mouth and nose into better alignment before surgery. At the same time, the appliance serves as a partial artificial palate. Called nasal alveolar molding (NAM), the device gives the baby a more normal mouth and better facial contour until surgery can be performed. If necessary, the prosthesis will be adjusted during the weeks it is worn by the baby. Babies who wear these appliances are often uncomfortable for the first day or two. They may explore the prosthesis with their tongue and may resist being fed. However, they quickly get used to it.

In some clinics, newborns with cleft palate are fitted with a simple prosthesis that closes the cleft within the first days of life. The prosthesis, which covers the palatal cleft, makes early feedings easier, until surgery can be performed. It also helps babies make their first speech sounds more accurately.

If your baby wears an appliance, it’s important that you learn how to take care of it. One of the dental staff on your cleft palate team will show you how to clean it.

For older children Children who are prone to the development of fistulas in the palate may need to wear a dental device called a palatal obturator so they can make early speech sounds more accurately. The device also lessens the tendency of food and liquid to escape through the nose during feeding by blocking its passage into the nasal cavity. The device is easy to take out and clean after feeding, and is usually worn only until the child is ready to undergo surgery to repair the palate.

During the time the child wears a palatal obturator, it may need to be changed or replaced at intervals to keep up with the child’s growth. Keeping appointments for your child’s follow-up visits to the dentist is essential to make sure the appliance still fits and is doing the job it’s supposed to.

For most children, an artificial palate is used only until the child’s natural palate can be closed surgically. For some children, the cleft is partly repaired by surgery, and the remaining opening in the palate is covered with a prosthesis. In rare instances, the cleft palate is not operated on, and a speech appliance is used to cover the palate opening and replace the function of the soft palate.

Your child’s teeth

Babies with cleft palate have more problems with the way their teeth grow in than most children, and they need special dental care. One or more of the teeth may be shaped wrong or be missing, or there may be two of the same kind of tooth. Usually, some of the teeth come through poorly positioned. Also, these children are more prone to having cavities while growing up than other children. If your child has dental problems, they can be treated by dental specialists on your cleft palate team.

Although treatment may not begin for a while, dental evaluations in infancy are essential to your child’s overall development. In fact, it’s important to keep close track of dental development throughout childhood to prevent long-term problems. Periodically, impressions may be made of your child’s mouth. X-ray pictures will be taken to evaluate teeth that haven’t come through yet.

Children with cleft palate need strong, healthy teeth to anchor prostheses and later to hold braces. So, start brushing your child’s teeth after meals with a child-size toothbrush or soft cloth when they first come in. Teach your child good teeth-brushing techniques as soon as she is old enough.

Never put your child to bed with a bottle or sippy cup of juice or milk. It’s a risky practice in general but especially in babies prone to dental decay. The liquid tends to pool in the mouth and encourage the development of cavities.

Six-month check-ups should be scheduled with a pediatric dentist from the time your child is two years old. Talk to the dentist about the presence of fluoride in your local water supply and whether fluoride treatment is a good idea. Any cavities should be filled right away. When your child gets older, braces may be needed. Your child’s dental needs will require careful attention from infancy onward.

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Your child’s hearing

Children with cleft palate tend to have more ear problems than other children. This happens because of problems with the Eustachian (yew-stay’-shun) tube—a slender tube that runs from the back of the nasal cavity to the space behind the eardrum.

Normally, the Eustachian tube opens easily and allows air into the space in back of the eardrum. This equalizes pressure on both sides of the eardrum so it can vibrate freely, picking up sounds from outside and sending them to the inner ear. A special muscle extending from the Eustachian tube to the palate opens the tube so air can pass into it. (This is what happens in an airplane when you suddenly go up in altitude, feel pressure on your eardrum, and relieve it by swallowing or yawning.)

In children with cleft palate, the Eustachian tube often can’t open completely. This is partly because of inadequate muscle action. The muscles that help open the Eustachian tube are the same ones that raise the palate. The blocked section of the tube near the eardrum may fill with fluid so that it no longer vibrates properly and hearing is impaired. If the tube stays blocked long enough, the eardrum may be damaged and the small bones of the middle ear may be worn down by the fluid. As a result, sound isn’t transferred properly from the eardrum to the nerve carrying sound to the brain.

Be alert for signs of ear infection or a blocked Eustachian tube in your child. Babies with either of these conditions often pull at their ears or rub them on their crib sheets. It’s possible for children to have a blocked Eustachian tube with no ear infection and therefore no fever. The condition should still be reported to the pediatrician to avoid the risk of hearing loss and impaired speech development.

Hearing tests and ear examsBecause children with cleft palate are prone to blockage of the Eustachian tube, their hearing should be checked regularly, starting in the first three months of life. Most cleft palate teams have an audiologist, a specialist who tests hearing. Your baby’s pediatrician should perform regular ear examinations, too. Call your pediatrician right away if your child gets a cold or seems to have an ear infection.

If your child’s hearing is impaired by fluid build-up or unequal air pressure, the doctor may place a tiny tube, called a myringotomy tube or PE (pressure-equalizing) tube, in each eardrum to drain fluid and equalize pressure. The doctor inserts the tube quickly, and there’s little pain involved. The tube can be left in place for long periods without discomfort and without harming the eardrum. Eventually it should fall out on its own, usually within two months to two years after placement. This should be confirmed by the baby’s doctor.

Problems with ear infections, fluid build-up, and blockage of the Eustachian tube seem to lessen when children reach about eight years of age. As the child’s face develops, the Eustachian tube angles downward more sharply and drains by gravity more efficiently. Problems are even less frequent in the teen years.

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bones of the middle ear

Eustachian tube

throat

eardrumouter ear

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Language and hearing Long-term hearing loss can cause language-learning problems. Children must hear clearly in order to learn words and sentences. Poor hearing may also lead to incorrect speech patterns because the child can’t hear well enough to copy the sounds of others’ voices. Children listen to their own voices, too, judging how well they’ve reproduced sounds.

Your child’s speech development

In babies with cleft lip only, speech development is generally no problem. If their speech development is delayed by the time they’re toddlers, there’s probably another cause. In such cases, the speech pathologist on the cleft palate team should be consulted for an evaluation and for therapy.

However, for children with cleft palate, speech therapy is often required, along with long-term assessment. These children may have speech problems for one or more of the following reasons:

• Incorrect speech patterns were learned before the palate was closed.

• The palate remains open, allowing sounds to escape into the nose and giving the child’s voice a nasal quality.

• Even though the soft palate at the back of the mouth has been repaired, it still isn’t able to seal the nasal cavity off completely. As a result, air and sound escape into the child’s nose during speech.

• Teeth are improperly aligned or missing, making it hard for the child to produce certain sounds that depend on the action of the tongue against the teeth, such as s and sh.

• Hearing problems prevent the child from hearing speech sounds clearly.

Palate open Sound made through the nose

Palate closed Sound made with the nose closed off

mama man rain home long no

pat cup kick shoe four sit

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Making speech soundsSpeaking is a complex skill. The larynx (voice box) plays only a small role. The muscles of the soft palate and throat play a major part. So do the jaws, tongue, and lips.

In English, the majority of speech sounds are made through the mouth, with the nose blocked off by the soft palate. To form most words, the speaker must be able to build up air pressure in the mouth. The air is blocked for a moment by the lips or tongue and then released with a little puff of air. The sounds for t and p are made this way (top, pot). Or the air is released through a narrowed opening under pressure, as in f and s sounds ( fan, see).

Sounds that require a pressure build-up in the mouth may be hard for the child with a cleft palate to make. When air leaks through the nose, the child can’t create enough pressure to make the sound correctly. The only sounds the child makes easily are vowels (a, e, i, o, u); nasal sounds such as m, n, and ng; and a few low-pressure sounds such as h, y, w, wh, and l.

Words spoken with palate open and closed

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The speech pathologist Your child’s speech development is one of the main concerns of your cleft palate team. That’s why there’s a speech pathologist on every cleft palate team. This trained professional will probably evaluate your child’s speech and language development before her first birthday, and for children with cleft palate, continue to evaluate annually until � years of age or more.

As your child grows and develops, the speech pathologist will evaluate the following:

• How well your child can make various speech sounds and combine them to make words.

• How well your child understands language, follows directions, and puts ideas into words.

• The quality of your child’s voice—whether the voice sounds excessively hollow or nasal.

Speech pathologists have training in the prevention as well as the correction of speech problems. A speech pathologist can help children with cleft palate learn to speak clearly and show parents how to do speech activities with their child at home. If you live far from your cleft palate center, you may be referred to a speech pathologist near your home. Some children need little or no intervention, while others may require extensive long-term therapy.

With the right kind of therapy, most children with cleft palate develop speech that can be easily understood. The goal of the speech pathologist is to help your child achieve normal speech by the time he or she starts school. School districts should provide speech therapy for children three years of age or more, but children often need additional help from a speech pathologist in the community who specializes in treating children with cleft palate.

What you can doYour child’s speech skills start to develop long before the first word is spoken. Speech develops from babbling, cooing, and other noises that are your baby’s attempts to “talk” to you. But communication is a two-way street. So, from the time you bring your baby

home, relate to her in as many ways as you can. Use clear, simple words and sounds. Avoid baby talk. As your baby grows, point out things and name them, share feelings and experiences, and look at books together. Reward your baby’s smiles, babbling, and “talking” with praise and affection.

When your child starts saying words, don’t expect correct pronunciation. Children want to learn to talk and do the best they can. If your child says some words unclearly, say them correctly, but don’t imply that the child’s version was wrong. If you press too hard for clearer sounds, your child may get discouraged and speak less. Respond to what she says in a happy, relaxed fashion, without a feeling of urgency.

In children with cleft palate, who have trouble making some sounds, speech improves after the palate has been repaired. It may be that no special speech training is needed. However, the speech pathologist on the cleft palate team can determine whether parents need to work with their child on speech activities at home.

When you’re helping your child with speech activities, patience is essential. It may take some weeks of practice after surgery for the muscles of your child’s soft palate to move in coordination with the tongue and lips. Keep your child’s speech pathologist informed about progress made at home, and request advice about ways you can help your child improve.

Some parents avoid actively encouraging their child’s speech development until the palate has been repaired. They’re afraid the child might develop bad speech habits. This is a mistake. Speech is an essential part of language learning and should never be discouraged. It’s also an important way in which children learn to relate to others.

Parent support groups

No matter where you live, there will be families nearby who have gone through the experience of having a baby with a cleft lip or palate. Your craniofacial team can help you make personal contact with them. Many larger communities also have organized support groups for parents, where they can meet to discuss common concerns and help each other deal with problems. It’s a good place to get practical help, share information about treatment and community resources, and reach out to others. Many of these groups have social events where families gather with their kids. Some parents organize play groups that meet regularly.

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Before your baby leaves the hospital, ask your cleft palate team if there’s a support group near your home. You can also call Cleftline, the toll-free number of the Cleft Palate Foundation ( 1-800-24-CLEFT), about parent support groups in your area. Sharing with other parents is especially helpful shortly after delivery of your baby and near the time your child enters kindergarten, grade school, or middle school.

If you can’t find a group in your community, think about starting one. Unless you live in a small town, chances are that your child isn’t the only one in your area with a cleft lip and/or palate. Information about starting a parent support group is available from the Cleft Palate Foundation (see Online resources at the back of this booklet).

Financial assistance The long-term care of a child with cleft lip and/or palate can be expensive. Many specialists are involved, and children often undergo more than one hospitalization. How can parents of average means pay for all this?

If you have private or group health insurance for your family, it should cover many of the expenses. Check your policy or call the insurance company for details about coverage. If you think your insurance company isn’t paying for everything it should, call your State Insurance Board. The number appears under state listings in the telephone directory.

Federal and state assistanceTRICARE. Formerly called Champus, this federally funded program serves members of the armed forces and their families. Reimbursement is provided for many of the medical expenses connected with surgery, hospitalization, and therapy for cleft lip or palate in the dependents of military personnel.

Medicaid. This federal program offers financial assistance to eligible individuals and families with low incomes and limited resources. Contact your County Health Department for information.

The Women, Infants and Children Supplemental Nutrition Program is a federally funded program that provides food, nutrition education, and healthcare referrals to low-income mothers and their children (up to age five). Eligibility requirements and local contact information are available at http://www.fns.usda.gov/wic.

Children’s Special Health Services. State children’s services agencies often pay for medical care for children when certain conditions are met. In most cases, children with cleft lip or palate qualify. Contact your County Health Department or ask the social worker on your cleft palate team for information.

Assistance from nonprofit organizations Easter Seals Society. Local chapters may be able to provide speech and hearing services. Many states have Easter Seals camping and recreational programs for kids with cleft lip or palate. Visit their Web site at http://www.easterseals.com for information on local chapters, call 1-800-221-6827 toll free, or write to Easter Seals, 2�0 West Monroe St., Suite �800, Chicago, IL 60606.

FACES. An outreach program of the National Craniofacial Association, FACES helps families with nonmedical expenses associated with travel to craniofacial centers for reconstructive surgery and/or evaluation. Eligibility is based on financial and medical need. The organization also provides educational materials and networking opportunities. Visit their Web site at http://www.faces-cranio.org, call 1-800-332-2373 toll free, or write to FACES, PO Box ��082, Chattanooga, TN �7�0�.

United Healthcare Children’s Foundation (UHCCF). UHCCF provides grants to help cover the healthcare expenses of children from low-income families who have inadequate health insurance or no insurance. Reimbursement is available for speech therapy, dental care, and counseling. For more information, visit their Web site at http://www.uhccf.org.

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Local service and church organizations. Lions Club, Sertoma, Civitan, and other local organizations sometimes provide emergency financial aid if they have funds. Look in your telephone directory for contact information. Also, Shriners may provide free medical care and transportation to Shriners Hospitals for Children. For details, visit their Web site at http://www.shriners.com.

Online resources

http://www.cleftadvocate.org. The Cleft Advocate Web site lists cleft palate centers and teams in the U.S. (Individual centers usually have their own Web sites, which you can explore for information about a particular team near your home.) Cleft Advocate, a program sponsored by About Face USA, provides information about medical topics and insurance, maintains a message center for families, and answers questions commonly asked by parents. The Photo Gallery shows before and after photographs of children with clefts.

http://www.ccakids.com. The Children’s Craniofacial Association provides referrals to craniofacial teams, responds to requests for educational materials, and has information about parent support groups. It offers travel funds to families for trips to cleft palate centers. Visit their Web site, call 1-800-535-3643 toll free, or write to the Children’s Craniofacial Association, ��0 Coit Rd., Suite 5�7, Dallas, TX 752�0.

http://www.cleftline.org. Cleftline maintains a 2�-hour hotline for families and provides information about craniofacial teams, free educational materials, and links to parent-patient support groups around the country. It also offers college scholarships to students with clefts and other craniofacial abnormalities. Visit their Web site, call 1-800-24-CLEFT, or write to the American Cleft Palate-Craniofacial Association, �50� East Franklin St., Suite �02, Chapel Hill, NC 275��-2820.

http://www.cleft.org. SMILES is a Web site maintained by the families of children with cleft lip, cleft palate, and other craniofacial abnormalities. The site has photographs and stories of children before and after surgical treatment, as well as information about the causes and treatment of cleft lip and palate.

http://www.widesmiles.org. Wide Smiles is a Web site sponsored by families of children with cleft lip and palate. It maintains an e-mail community and access to special chat rooms. The site features a section showing ultrasound pictures of children diagnosed before birth, as well as photos taken at birth and after surgery. There are links to hundreds of articles on the care of children with cleft lip and palate.

http://www.dontlaugh.org. Operation Respect, an organization sponsored by a number of educators’ organizations, has developed free school curriculums to reduce bullying and teasing of children with disabilities. Programs are available for elementary and middle schools, as well as after-school programs and camps. Visit their Web site, call 1-212-904-5243, or write to Operation Respect, 2 Penn Plaza, 5th Floor, New York, NY �0�2�.

http://www.stopbullyingnow.hrsa.gov. Stop Bullying Now is a government-sponsored program to educate children and parents about bullying and what they can do to stop it. The interactive Web site includes personal stories and cartoons.

Books and videos The Cleft Palate Story is a ��7-page reference book for parents and health professionals about the different types of clefts, causes, treatment procedures, and outcomes. Written by Samuel Berkowitz and published by Slack (2006), this paperback includes illustrations and an appendix of resources on insurance, support groups, cleft-related publications, and videos. The book can be ordered online from http://www.amazon.com for $2�.95 new—less for used copies.

A Parent’s Guide to Cleft Lip and Palate is a ��0-page hardcover book with information and illustrations about the treatment of cleft lip and palate, infant feeding, speech and hearing problems, and dental development. Written by Karlind Moller, Clark Starr, and Sylvia Johnson, the book is published by the University of Minnesota Press (�990). New or used copies can be ordered from http://www.amazon.com for about $�0 and up.

Therapy Techniques for Cleft Palate Speech and Related Disorders is a �92-page illustrated paperback by Karen Golding-Kushner (Singular, 2000). Written for health professionals, many parents also find the book useful. Topics include the mechanics of speech production, cleft palate speech errors, and exercises to help your child make correct sounds. The book is available new or

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used from http://www.amazon.com ($56.2� new) or http://www.bookfinder.com (usually over $�0). It may be available at local public or university medical libraries.

Children with a Facial Difference: A Parent’s Guide is a �6�-page paperback written by Hope Charkins for parents of children with facial abnormalities such as cleft lip and palate (Woodbine House, �996). Covering medical, educational, legal, and social issues, as well as aspects of family life and self-esteem, the author’s work was overseen by an advisory board of distinguished craniofacial experts. The chapters contain information and insights from parents of children with facial abnormalities, and the book includes a glossary of terms, reading list, and an index. Used copies are available from http://www.amazon.com for about $� and up.

Bullies and Victims: Helping Your Child Through the Schoolyard Battlefield is a 2�-page paperback for parents, educators, and mental health counselors who work with elementary and middle school children. Written by SuEllen Fried (community activist) and Paula Fried (clinical psychologist), the book describes types of bullying, suggests interventions at all levels (from the family at home to society), and includes numerous case examples (M. Evans & Co., �996). New copies are available from http://www.amazon.com for $��.66. Used copies start around one dollar.

Face First is a 29-minute video available in VHS or DVD format, produced by Mike Grundmann (�998). The film follows the stories of four people with facial abnormalities from birth to adulthood. Directed with humor and compassion, the film has won several awards and has been shown on PBS. For information about rental or purchase, visit http://www.fanlight.com, call 1-800-937-4113, or write to Fanlight Productions, PO Box �08�, Harriman, NY �0926.

Every Child is Perfect, a 50-minute DVD produced at the Craniofacial Center, University of Florida (Tim Nackashi, 2007), shows interviews of children, parents, and members of the cleft palate team. The film includes delivery room and surgical scenes, postoperative results, and long-term treatment outcomes. The DVD is available at no charge, although postage/handling fees may apply. Send e-mail orders to [email protected], write to Florida Cleft and Craniofacial Network, PO Box �00�2�, J Hillis Miller Health Sciences Center, Gainesville, FL �26�0, or call 1-352-392-1635.

For breastfeeding mothersBreast pumps

Breast pumps range from inexpensive hand-operated devices ($�� to $50) to automatic electric pumps with a suck-release cycle that resembles a baby’s sucking (usually over $�50). Manual pumps are generally time-consuming to use, tiring, and inadequate for mothers who feed their babies exclusively on expressed breast milk. High-tech hospital-grade pumps are the most expensive type but can be rented for about $�0 to $50 a month.

Two of the most popular brands of breast pumps are Medela and Ameda. Information about Medela products is available on the Web at http://www.medela.com or by calling 1-800-435-8316 toll free. Ameda products are shown at http://www.amedababy.com and can be ordered by calling 1-877-633-9464 toll free.

Information and support

La Leche League, an international organization of breastfeeding mothers, is an excellent source of information on breastfeeding. Dedicated to supporting the practice of breastfeeding in new mothers, La Leche League maintains a Web site with links to local groups and consultants throughout the country (http://www.lalecheleague.org). The site offers breastfeeding education materials, links to online chats, a catalog of books and videos, a store featuring breastfeeding products and publications, and lists of meetings and conferences open to breastfeeding mothers and their families.

The American Academy of Pediatrics New Mother’s Guide to Breastfeeding is a �0�-page illustrated book on breastfeeding written for the American Academy of Pediatrics by Joan Meek and Sherill Tippins (Bantam Books, 2005). This paperback can be ordered online at http://www.amazon.com for $6.99 new—less for used copies.

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AthenaWhen Athena was born, we had never heard of a cleft. It was overwhelming to hear what was in store for her, and we really didn’t absorb all that the doctors told us. The hospital gave us a copy of Looking Forward, and it has helped us understand a lot after the shock wore off. Athena went through childhood with a smile and has accepted everything that has come her way. As she got old enough to understand, we were honest about what was to come and assured her we would take care of her. She handled surgery better than we did!

Now ��, Athena has been through seven surgeries with no problems and loves her craniofacial team. She is a happy, loving, caring, and outgoing person and is very accepting of other people’s differences. She sets a good example for everyone she meets. I believe that she is who she is because of her cleft, and I would not change a thing.

JohnJohn is funny, smart, and engaging—with a kind word and a helping hand for everyone he meets. Now �7, John is the poster child for believing in yourself and your dreams. At just two weeks of age, John began his long-term relationship with the craniofacial team. During his first year, he had a lip adhesion, lip repair, and a palate closure, and all of his surgeries were quite successful. A series of ear tubes maximized hearing and helped support clear speech development. A second lip revision just before the start of kindergarten improved overall aesthetic appearance. He has had many other surgeries and procedures, and much help and understanding from caring and talented professionals.

We’re so proud of John. He’s an avid player of recreational team sports, a born thespian with starring roles in middle school and high school productions, an all-around scholastic talent, and a dedicated community contributor. John is a positive role model with a remarkable ability to overcome and excel at whatever life brings his way.

Four Families Share Their Inspirational Stories

Looking Forward


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EmilyI’m Emily, a sophomore at the University of Florida. I’m studying to be a speech pathologist or audiologist. I enjoy dancing, music, and traveling. I was born with a unilateral cleft lip and palate. My lip was repaired about a month after I was born and my palate shortly after that. I’ve had a bone graft for my teeth, several surgeries on my nose, and I’ve also undergone years of orthodontics because I was missing a tooth.

After so many surgeries, I sometimes felt like giving up. My cleft bothered me at times, but I never let it keep me from accomplishing my dreams. Although it has been a difficult journey, I feel that my cleft has been a blessing. It has strengthened me and allowed me to meet some wonderful people. I feel that my cleft has helped me identify with others who may be different or in need of help. If I had the opportunity to go back in time, I would not make any changes in my life.

MelanieMelanie is a very happy, outgoing, athletic, nine-year-old girl who loves life. She has many friends and enjoys school, especially math. Melanie was born with a unilateral cleft lip and palate. She was three months old when her lip was repaired and �5 months old when her palate was closed. She’s had other surgeries and has been in speech therapy since she was two years old.

Throughout her life, I always wondered if Melanie would be treated differently than other kids and whether or not people would tease her. So far that hasn’t happened. When Melanie is asked why she has a scar on her lip, she explains that she was born with a cleft lip and palate. That ends the conversation. The fact that Melanie was born with cleft lip and palate has been a blessing. Parents don’t want their child to be born with a cleft. However, I personally feel that, because my daughter was born with cleft lip and palate, it has made her the happy, bubbly, and full-of-life child she is today.


ConsultantsJohn Nackashi, MD, PhD Medical Director, Craniofacial Center Associate Professor and Chief, Division of General Pediatrics University of Florida Gainesville, Florida

Virginia L. Dixon-Wood, MA Speech Pathologist and Clinic Director, Craniofacial Center University of Florida Gainesville, Florida

William N. Williams, PhD Speech Pathologist and Director, Craniofacial Center University of Florida Gainesville, Florida

Brent Seagle, MD, FACS Associate Professor and Chief, Division of Plastic and Reconstructive Surgery University of Florida Gainesville, Florida

Heather Stalker, MSc Senior Genetic Counselor, Department of Pediatrics University of Florida Gainesville, Florida

Ambiola Adewumi, DDS Assistant Professor, College of Dentistry University of Florida Gainesville, Florida

Patrick Antonelli, MD Professor and Chair, Department of Otolaryngology University of Florida Gainesville, Florida

Writer

Barbara G. Cox, EdS Director, MedEdit Associates Gainesville, Florida

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